Courage Under Wraps

For the past year my new friend and fabulous photographer Jodi Champagne, has been documenting my son’s life as it is.

My son’s name is Nicholas Zahorcak, we call him ‘Nicky’. He was diagnosed shortly after birth with the Recessive Dystrophic form of Epidermolysis Bullosa.
Jodi photographed us doing bandage changes, during trips to the various Doctors, from the Dentist of Asecra dentists to Hydrotherapy, came with us Trick or Treating and to visit Santa & the Easter Bunny. She witnessed pain, suffering and sibling rivalry.

“Courage Under Wraps” is now a reality, the reality of life with RDEB, from the moment Nicky wakes up in the morning to the moment he goes to bed at night, aimed at raising EB Awareness. At this point it’s available in print, as a PDF download and as an ebook for the iPad. Jodi is working on getting it available in other ebook formats, such as the Kindle & the Nook. Part of the proceedings are donated to the EBMRF for a cure.

Here’s just 3 of the hundreds of photos that are in the book…

Nicky (and mom) during a bandage change, doing some physical therapy on his hand. From the book ‘Courage Under Wraps‘

Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

Thank You for Visiting!

About Me

My name is Silvia and while I was born and grew up in Italy, I now live in Southern California (USA). I am Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted.
I started this website when Nicky was just an infant because I could not find any information about EB, so anything I came across I posted for the benefit of other parents and it grew from there. I still run this website (and its FB page) because I never stopped looking for information!
For more about me, you may visit my personal blog. Thank You for visiting!

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